Patients & Families

Acromegaly is a rare disorder caused by a noncancerous tumor on the pituitary gland, which is located just below the brain. The pituitary gland controls many body functions, including growth, metabolism and reproductive function.

In acromegaly, a tumor that grows on the pituitary gland produces too much GH, which can prompt the liver to overproduce IGF-1. Too much GH or IGF-1 in the bloodstream signals the body to grow, and can result in a wide range of signs and symptoms.

According to the National Organization for Rare Disorders (NORD), acromegaly occurs in about 60 people for every one million in the United States, classifying it as a rare disease. Because acromegaly is often misdiagnosed or overlooked, these numbers likely underestimate how many people may be living with the disease. While the disorder is most often diagnosed in middle age, acromegaly does not appear to be gender-specific, as it affects men and women equally.

People living with acromegaly can experience the following signs and symptoms:

Enlargement of the hands, feet, tongue and internal organs

Increased sweating

Thickening of the facial features, especially the nose

More prominent jaw and forehead

Spreading out of the teeth

Joint pain

Sleep apnea

Fatigue

Pain and tingling in the hands and wrists

Large numbers of skin tags

Increased incidence of colon polyps

Other serious health conditions associated with the progression of acromegaly include type 2 diabetes, hypertension, respiratory disorders and cardiac and cerebrovascular disease.

The tumor on the pituitary gland can also cause symptoms unrelated to GH or IGF-1. The tumor sometimes grows large enough to impair the pituitary gland or push against nearby nerves and blood vessels in the brain. Symptoms caused by the tumor itself include:

Headaches

Partial loss of vision in one or both eyes

Impotence

Low sex drive

Changes in the menstrual cycle for women

For more information about acromegaly and rare disorders, please visit the following external support sites: